Tackling Endometriosis One Blog At A Time

Month: September 2017

Okay, because I was out of town last Friday, I’m giving you TWO quotes today 🙂

My friend and mentor recently shared a quote that I fell in love with, and I wanted to share it with you. I’d never heard it before, but given who said it, you think I would have!

“Courage is being scared to death, but saddling up anyway.” ~John Wayne

And this one I found while scrolling through uplifting quotes:

“You do not need any more strength. You only need to realize how strong you already are.” ~Vironika Tugaleva

So what are you going to do this weekend? Next week? Next month? The rest of the year?

I hope you are able to look within yourself, sense your inner strength and beauty, and move ahead full steam…with whatever you may have on your plate, or what you’ve been putting off, or what’s been hindering you, or what’s lurking in the shadows…Just close your eyes and go. You can do this.

Have a wonderful weekend.

~Lisa ❤

Blogs I’ve updated this week:

I added an Events Calendar! If you look at the top right of your computer screen (not sure where it’s located on tablets and/or phones), you’ll see a new “Events” option. Click on that and it will bring you to our calendar of upcoming events 🙂

After suffering from horrible periods and cramps since 13 years old, Erika 18 years old when she diagnosed with Endometriosis. Living in Ireland, she shares her tale with us just three years later:

Erika’s Journey: This is just a short story of the life and pain I’ve been living in! My name is Erika, I’m 22 and was raised in Dublin. I still live at home with my mother and brother seeing as its so hard to find a home at this minute in Ireland. It all started when I had my first period, I was in a lot of pain and had no clue of actually what was happening to me? All young girls oh I can’t wait for my periods to come so they would feel more mature ‘grown-up”. Where with me it was a different story completely, from my first periods all I remember was pain, very severe pain and didn’t know how to control it. I thought I just had bad periods because my sister (5ys older) always suffered very bad which led to ambulances been called so I was scared that I was going to be the same. But when my sisters stopped ovulating her pain would go and she would be back to normal, when I wasn’t like that every month was a dread without a doubt the would come and with a bang! I couldn’t walk, move to go the toilet, bend to pick up anything id be left immobile for days and the pain was so awful I needed help I didn’t know how to make it stop 2weeks before my periods came I’m in pain and when the arrive yill days after they go it’s not right ! so after years of battling with my weight since I was a child with i coped with because of all forms of abuse I suffered I learned how to cope with food and depended on it to fill that hole in my stomach . as the years going on everything problem I had was “supposedly” because of my weight and my gynecologist was so rude and made me feel so scared I was 13 seeing on for the first time and let’s say she was a bitch!!! also she treated my sister with the same care not a nice women at all ! she made me feel so horrible like it was all in my head and if I wasn’t so overweight I wouldn’t be like this ? so as id always suffered from depression it went into a worse spiral from there. I Felt so low and disgusting in myself and I didn’t even know what was going on! I was left for years undiagnosed looking for ways to stop the pain, from all types of the pill to the contraceptive bar been but in my arm which all most of the time eased the bleeding somewhat but the pains always crept back in. Constantly been so all over the place trying to figure out an answer! I had missed lots of school because of my absence , my junior and leaving cert were very affected seen as I had to complete most of it at home to be even able to pass I also missed out on a lot of fun times growing up with my friends and family and also my Debs in school which every girl can’t wait for ! so as time goes on I was watching Tv one night and seen a girl speak to a doctor and she was going through the exact same as me ! I never knew anyone who I could speak to who was suffering the same! Everyone thought I was faking it when there was even a stage my pain meds wouldn’t work I felt as if I was going mad! I explained to my doc of what I had seen on tv and suggested that maybe “endometriosis” could be the problem ? and got the response of “oh i never thought of that ?” so after all the years fighting for an answer I found out what was wrong with me myself and not the doctors ? funny right? NOT! I was told if I didn’t get my weight down they wouldn’t operate on me? So that made me more upset because of the pain I was I could hardly walk up my stairs never mind hit the gym! But I slowly started walking as much as I could to lose the weight changed my whole eating plan as it wasn’t healthy at all! But I had in my mind now once I lose this weight the pain will be gone and ill be fine working extremely hard on myself to achieve my goal and I did! From weighing over 20 stones to get down to 12 stones was a huge goal for me I was so happy! Got weighed and got told well we can do your keyhole surgery now and I was both really scared but happy because I thought this is what I’ve been waiting for all years! ill be happy and healthy after it! But sadly I wasn’t, they done the surgery and found the endo on my right ovary and removed it then inserted the Mirena coil to help with my periods. It has been nearly 3 years on and I’m still in the same position that I was already in. I cant hold down a job because of my disease also my mental health has really been affected badly from all of this. It also affects every relationship I have in my life with people because I don’t know when the pain it’s going to start I have no control over it. So things haven’t had the best outcome at all, constantly in and out of hospitals with this disease and can’t find the right help. My last treatment option is for me to go on a “decapeptyl injection” which brings my body into early menopause for 3moths or longer ! and the side effects don’t look nice at all after stories I’ve read . its a road I really don’t want to have to go down but feel as if I’ve no choice anymore . I have done everything possible that the doctors have advised but I’m not going to put that injection into my body I mentally don’t think I could cope with the side effects but the hospital doesn’t seem to listen. Its my body and my choice ! Hoping things will improve soon ! only a brief description of how my life has been since this horrible disease as taking toll on me and my life

Words of Advice for Us: know your own body and how different meds/treatments make you feel. Listen to your body and your mind. Go with your gut feeling in situations its usually always right! always ask as many questions as you can about side effects or long term effects! I have wanted a child so long and their answer time at age 14/15 was to have a baby its the only cure and it’s not always true! look after yourself and be kind to yourself life is hard enough day today and with the pain on top its an even harder to cope. Keep doing and getting through every day the best you can.

The Last Word: IT’S NOT ALL IN YOUR HEAD! YOUR PAIN IS REAL! AND mental health is as important as physical!! Beware of addiction caused by strong painkillers that you could be prescribed there dangerous ! and only use them when u really need to! water bottle and heat pads are your best friend. Anybody out there with any advice I would be very grateful to hear! and if I can help anybody in any way I will try or anyone can get in contact me also. Thank you.

I want to send a special Thank You out to Erika for being brave enough to share her personal story, struggle, and victories with us today. ❤ You are a beautiful, brave, and strong woman. Thank you!!!

And if YOU would like to share your story, you can do so by clicking here. The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

So, today I had an appointment with my gynecologist and surgeon, Dr. Mel Kurtulus. It was to discuss my Endometriosis symptoms, which I felt have been worsening. My (two) July periods, and my August period were horrendous. Going through my 2017 Pain Diary, March and April were also up there on the pain scale. I was all prepared to go on in and ask for another surgery…and possibly a hysterectomy just to rid my life of periods (since that’s when most of my pain is present). I know it’s not a cure, but it would most certainly help some…

Then, last Thursday evening I started my period: the night before I was to leave for a family camping trip…I was devastated. I expected to be fully-medicated the entire weekend. I packed my Naproxen Sodium, my Tylenol 3 with Codeine, my Tramadol, and my Zofran. BUT…surprise surprise…my period cramps NEVER rose above a 1 (on a scale of 1-10) for pain levels! I didn’t even have to take an Ibuprofen…the ENTIRE weekend! (Insert elated exclamation here)

WHAT? I contemplated canceling my appointment for today. I mean, if I could have ONE good period in the midst of horrendous ones…maybe surgery wasn’t required. In fact, I knew it wasn’t. But…I didn’t cancel. I wanted to let my doctor know about the good news!

So, in I went. And I was greeted with his customary smile and handshake. Closing the door behind me, I immediately let him know I was going to be his easiest patient all day. I proceeded to tell me about my previous heartfelt determination to come in and ask for surgery, followed instantly by my good news about my most recent period. And again, he smiled. I told him how amazing it was how quickly hope resurfaces just because I had a pain-free period. How it brought about this sense of…I struggled to find the right words, so my doctor found them, “I can do this.” And it’s true. He asked about my previous period pain levels and rather than struggle to remember, I handed him a 15-page printout of my 2017 Pain Diary. And he took the time to go through EVERY page and every line, commenting here and there about my notes. He didn’t seem impatient or put-out or annoyed. He genuinely took his sweet time. He asked about my pain pills, if they’re working, if I wanted to go back on birth control, etc.; to which I answered each one.

And our plan with my Endometriosis?

Continue to monitor my pain, symptoms, and diet. We discussed diet some (and he gave me a few questions I’ll ask Merritt Jones at her Optimal Nutrition & Endometriosis workshop).

Take pain pills, as needed. Starting with Naproxen Sodium, and if those don’t kick in to proceed with 1/2 a Tramadol and a Zofran. Tylenol 3 doesn’t work well for my pain, so I consider it out of the picture.

If my symptoms and pain become unmanageable by medication and become consistently worse (the key word here is “consistently”), then we will discuss surgery.

Those are the only two choices with this disease:

Symptom management (whether it be medicine, diet, acupuncture, etc.), and

Surgery to remove as much of the disease as possible…but always with the risk of recurrence.

And that’s it. And I’m okay with this plan. As is he.

I apologized for not canceling my appointment since it was just to confirm what I already knew…and he brushed it off. He smiled gigantically, once more shook my hand, let me know this was a “social visit” and I could come back at any time. He loved these kinds of appointments. And as I was leaving his office, he insisted that I let him know if there was ever anything he could do to help our Endometriosis Support Group or any of our gals. He genuinely cares.

But why am I sharing all of this with you right now? Well, because I am so overjoyed, elated, and uplifted by the understanding and relationship I have with my doctor. I feel confident enough to face my next period head-on, with no fear or dread. And YOU can have a similar relationship with your doctors. Just take the time to talk to them. Be patient when they are running behind. Forge those important bonds and trust with your healthcare providers. And if you absolutely despise or distrust your physician, find another. There are good ones out there. Ones that will listen. Ones that will understand. And ones that care.

It’s FRIDAY!!! Already!?! This week moved so slowly, but now that it’s over I feel like it sped by!

This week I’ve been privy to a lot of stories of pain, suffering, and strength. Some incredibly heartbreaking. Others uplifting. And once more I’m reminded that good things can rise out of crap and suffering.

T.E. was diagnosed with Endometriosis when she was 28 years old. Now 31, she shares her story with us:

T.E.’s Journey: I was diagnosed with Endo around 28. I saw my gynecologist for painful sex and cyst rupture after sex and he recommended me seeing an infertility doctor for possible Endo. I saw the specialist and he said I did have chocolate cysts and suggested surgery to get a good look at what’s going on. I had the surgery; I did have lesions and my chocolate cysts were drained. I also had a low count of eggs at the time so I had to decide if I wanted to have kids now or never so I never started the pill after surgery.

Fast forward six months, I was back in pain and now till this day, I have had new symptoms arise. Hip pain and the bottom of my feet are new symptoms. I walk for a living so it’s been difficult. I still get leg pain, which is not even around the time of my period and mood swings. I also get lower back pain and severe cramps. My infertility doctor says he can’t do anything else for me so I have been trying other ways. I saw a holistic doctor and went that way and it did help, but the pain came back. I’m going to try acupuncture soon. Wish me luck!!

I want to send a special Thank You out to T.E. for being brave enough to share her personal story and struggle with us today. Wishing you the BEST of luck with acupuncture!! You are a beautiful, brave, and strong woman. Thank you!!!

And if YOU would like to share your story, you can do so by clicking here. The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

Our Endometriosis Family Support Group meeting will be on Wednesday, September 20, 2017, at 7 p.m. Our scheduled speaker for this month is Devra Densmore, Associate Director of Advocacy Relations at Continuum Clinical. If you have ever wondered about joining a clinical research study, this will be a wonderful opportunity to learn!

Thanks for doing this! I was diagnosed with Endo in May 2017. After of course many ultrasounds, bladder scans, colonoscopies… you name it. The laparoscopy in May only revealed 2 very tiny cysts on my ovaries. My doc was able to get a tiny sample sent it off and then after much debate, they gave me the Endo diagnosis. My pain was very severe. I could barely complete normal activities without taking either 800 mg of ibuprofen every 2-4 hours, tramadol, rest, etc. With that being said, my question is even if the Endo is so small can it still cause a great deal of pain? I’ve heard women who have Endo all over their bodies. I tend to question myself because the cysts were so small. I apologize for the ridiculously long response. It’s just been very heavy on my mind. Thanks for listening and all that you do!

Best,
Jocelyn

~

Hi Jocelyn!

Thank you so much for responding! I’m glad you received a diagnosis; helps to know that the pain isn’t normal! AND your response was not ridiculously long at all. So there! 😛

To answer your question about heightened pain levels, even though your Endo is “so small”…it doesn’t matter the amount of Endo you have. Pain is pain is pain. And this disease can cause havoc! I did a bit of research about this topic after my 2014 diagnosis and women with Stage 1 Endo (which sounds like what you may have) can have extreme pain…while some women with Stage 4 Endo (which is as bad as it gets) have little to NO symptoms or pain. Isn’t that bizarre? Some women with Stage 1 Endo have NO pain while some do…the amount of the disease found in your body DOES NOT dictate the level of pain. The presence and ferocity of the pain of the disease is different for every person, regardless of their “Stage” level. Do not let your “small cysts” devalue your pain or belittle your illness or suffering. Never let anyone tell you otherwise. If you’d like to read more about my research from back then, please check out https://bloominuterus.com/2014/11/19/endoinvasion-stages/.

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If you have an Endo-related question you’d like me to delve into, shoot me a note here.

Permission was granted by Jocelyn to use her name and publish this Q&A. Hoping this Q&A session helps answer some questions that other EndoSisters or their support systems may have.